Is the English Cancer Patient Experience Survey representative? A comparative analysis with the National Lung Cancer Audit
Introduction
Survival after diagnosis of lung cancer appears to be lower in the UK compared with other western and European countries, despite recent improvements [1,2]. Inequalities in the receipt of anti-cancer treatment have been reported with effective treatment under-utilised and uptake of active treatment lower in the UK compared with Scandinavian and North American countries who have better survival [[3], [4], [5], [6]].
Recommendations have been made by the National Institute of Health and Care Excellence to improve the quality of cancer care in England including the training of specialist cancer nurses to help identify the needs of people diagnosed with cancer and provide support throughout the cancer pathway, and involving people in decisions that shape or reshape their own cancer care including anti-cancer treatment options [7]. There has been significant investment of resource in surveys measuring patient experience to provide information on the quality of healthcare directly from the service users’ point of view [8]. The National Lung Cancer Audit (NLCA) is now a leading national audit and one of the largest and most detailed on lung cancer internationally, however it lacks a programme for patient reported outcome or experience measures.
For healthcare service providers, feedback from patient experience surveys helps to identify where cancer services can focus efforts to improve care [9,10]. For service users, this helps in making choices about their care and for quality assurance. The English National Cancer Patient Experience Survey (CPES) was commissioned by the Department of Health for this purpose and is carried out annually by Quality Health. Feedback from similar patient experience surveys has been successful in informing healthcare service quality in outpatient departments and patient-doctor interaction in countries such as Australia, Finland and the USA [[11], [12], [13]]. For CPES to achieve its purpose, it is important to understand how patients responding to the survey represent people diagnosed with lung cancer in England. It currently obtains responses from over 65,000 people with cancer each year, approximately 6 % of whom have lung cancer; this representation relative to the incidence of lung cancer is lower than for many other tumour sites, particularly breast cancer [14,15], which may partially reflect CPES’s sampling frame of selecting people recently discharged from hospital treatment episodes. Post-sampling mortality and sociodemographic variation in survey response patterns in CPES has been assessed across all cancer types [16]. Assessment of how CPES respondents are representative of the whole incident cancer population, however, has not been conducted, which is arguably important for the application of CPES in changing cancer services that serve all people with cancer. To do this, a comprehensive assessment for each cancer type is required, that includes detailed comparisons between individuals’ clinical and treatment pathways as well as their sociodemographic characteristics. This opportunity has only recently arisen through the individual patient linkage of CPES to national cancer registry data.
We used national cancer registry data (from the NLCA) linked across multiple sources including route to diagnosis, anti-cancer treatments and long-term follow up, to assess how people with incident diagnoses of lung cancer included in CPES represent the sociodemographic, clinical, treatment characteristics and survival of the whole incident lung cancer population in England.
Section snippets
Study population and data sources
Information on all people in England with a new primary diagnosis of lung cancer (International Classification of Diseases (ICD-10) codes C34*) between 2009 and 2015 was obtained from the National Cancer Registration and Analysis Service (NCRAS) run by Public Health England (PHE). NCRAS forms the most complete source of information on all people diagnosed with incident cancer by obtaining information from across the National Health Service (NHS), which covers 98–99 % of all hospital activity in
Study population
The flow diagram (Fig. 1) demonstrates how the study population was derived. From the whole NLCA population, we included only those with one primary lung cancer diagnosis (not multiple tumours) (N = 244,957). We excluded individuals diagnosed before age 18 years or diagnosed upon or after their death (death certificate cases). From an initial 18,023 individuals with linked CPES questionnaires, we excluded 698 individuals whose CPES records were likely to be unrelated to their lung cancer
Summary of main findings
Our study of over 240,000 people from the English NLCA showed that those with self-reported information on their clinical experience from CPES had representation across a wide number of sociodemographic, clinical, health service and anti-cancer treatment groups, however, balanced representation varied. After accounting for all factors together, we found CPES under-represented lung cancer patients who were older, from more socioeconomically deprived groups, had worse performance status, the most
Ethical considerations
The data was obtained from PHE. Ethical approval was obtained by the researchers from the University of Nottingham Faculty of Medicine and Health Sciences Ethical Committee (reference no: 182-1710). We also obtained study approval from the NHS Health Research Authority (reference no: 18/LO/0110). A data sharing agreement to use the linked dataset was obtained from PHE (reference no: ODR1617_288). The study was performed in accordance with the Declaration of Helsinki.
Availability of data and materials
Because of the sensitive and potentially identifiable nature of the data used for this study, the researchers have been granted permission to conduct analyses based on their approved protocol and can only present aggregated data. All data used in this paper are available directly from the PHE ODR subject to appropriate study approval and data sharing agreements.
Funding
This study was funded by the Roy Castle Lung Cancer Foundation.
Authors’ contribution
The conception of the study was done by LJT and IS with input on the design from RBH, AK and YN. YN acquired, managed and analysed the data from PHE. YN, LJT, IS and AK were involved in the core data interpretation and shaping of the analysis. YN and LJT wrote the core of the manuscript and all authors critically reviewed the manuscript and approved it prior to submission.
Declaration of Competing Interest
The University of Nottingham has received payment to analyse data for the NLCA annual reports since 2009. RBH is the academic clinical lead for the analyses and LJT and AK have been the data analysts for the annual reports. PB is the clinical lead for the NLCA. IW has previously been the senior clinical lead of the NLCA and then Clinical Director of the Care Quality Improvement Department at the Royal College of Physicians.
Acknowledgments
The authors would like to acknowledge the Roy Castle Lung Cancer Foundation who funded the study and Public Health England for providing the data. They would also like to thank the Palliative Research Team at Hayward House, Nottingham City Hospital (Cathann Manderson and Sarah Schofield) for helping with recruiting people with lung cancer for our Research Advisory Group, and all participants with lung cancer and their families who participated in the advisory group.
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